Developing genetic counselling services in an underdeveloped healthcare setting View Full Text


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Article Info

DATE

2021-09-20

AUTHORS

Andrada Ciucă, Ramona Moldovan, Adriana Băban

ABSTRACT

Genetic counselling services are well established in North America, Western Europe and Australia. In other regions, genetic counselling services are still emerging. Where this is the case, an in-depth understanding of the main stakeholders' needs, challenges and opportunities will inform the changes and innovations required to bring genetic counselling closer to the community. The present study explored the needs and challenges of patients, family members and professionals with a view to setting up a cancer genetic counselling service in Romania. In order to get a comprehensive outlook, key stakeholders were interviewed using data source triangulation method. Thirty-four semi-structured interviews were conducted (13 patients, 11 family members and 10 professionals). Thematic analysis was used to explore and identify needs, barriers and opportunities in emerging cancer genetic counselling services. Three major themes were identified: (1) the "Needs" theme mainly focuses on various types of support that participants mentioned wanting: psychosocial, peer and additional support; (2) the "Challenges" theme includes aspects related to limited access to healthcare, lack of integrated services and pressure on the families; (3) the "Hopes" theme highlights the wish for integrated healthcare and an empathic rapport with healthcare providers. Our findings highlighted the main needs, challenges and hopes the patients, family members and professionals have and provides the groundwork for setting up cancer genetic counselling services. More... »

PAGES

539-548

References to SciGraph publications

  • 2012-02-08. Are family-oriented interventions in Portuguese genetics services a remote possibility? Professionals’ views on a multifamily intervention for cancer susceptibility families in JOURNAL OF COMMUNITY GENETICS
  • 2015-08-12. The effect of personal medical history and family history of cancer on the uptake of risk-reducing salpingo-oophorectomy in FAMILIAL CANCER
  • 2015-06-19. Challenges for providing genetic counselling in Colombian genetic clinics: the viewpoint of the physicians providing genetic consultations in JOURNAL OF COMMUNITY GENETICS
  • 2017-03-02. A Systematic Review of Randomized Controlled Trials to Assess Outcomes of Genetic Counseling in JOURNAL OF GENETIC COUNSELING
  • 2014-11-13. A practice guideline from the American College of Medical Genetics and Genomics and the National Society of Genetic Counselors: referral indications for cancer predisposition assessment in GENETICS IN MEDICINE
  • 2018-10-05. The Global State of the Genetic Counseling Profession in EUROPEAN JOURNAL OF HUMAN GENETICS
  • 2017-05-17. Complementarity between medical geneticists and genetic counsellors: its added value in genetic services in Europe in EUROPEAN JOURNAL OF HUMAN GENETICS
  • 2012-04-01. Essential Elements of Genetic Cancer Risk Assessment, Counseling, and Testing: Updated Recommendations of the National Society of Genetic Counselors in JOURNAL OF GENETIC COUNSELING
  • 2012-03-15. The evolution of personalized cancer genetic counseling in the era of personalized medicine in FAMILIAL CANCER
  • 2018-08-31. Family health history and genetic services—the East Baltimore community stakeholder interview project in JOURNAL OF COMMUNITY GENETICS
  • 2017-05-04. Women with Family History of Breast Cancer: How Much Are They Aware of Their Risk? in JOURNAL OF CANCER EDUCATION
  • 2010-05-05. Ethicolegal Aspects of Cancer Genetics in CANCER GENETICS
  • Identifiers

    URI

    http://scigraph.springernature.com/pub.10.1007/s12687-021-00546-z

    DOI

    http://dx.doi.org/10.1007/s12687-021-00546-z

    DIMENSIONS

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    PUBMED

    https://www.ncbi.nlm.nih.gov/pubmed/34545547


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